It has been too long since I have updated. For me, that’s a sign that things have been better. My daughter, who is 11.5 now, has continued to do her daily regimen of medications, herbals, and vitamins/supplements. She sees her specialist 2 to 3 times a year in person and I do phone appointments every 6 to 8 weeks. We just saw her specialist in December and it was decided that we would take her off of the malarone. This is a drug used to treat malaria (which is also given for the parasite, babesia). I will talk more about that later.

I have had some people message me to get updates on mold and current meds and I never added my daughter’s labs for mold so I plan to do that here today.

Let’s start with the mold. We did an ERMI test of the house and it turned out that we have “average” mold so it did not stand out as anything to worry about. It stumps us because my daughter’s labs came back with lots of elevated numbers for mold. She has been consistently improving though so this information will just remain in the back of our minds for now. We did also do a regional allergy blood test for Southern CA and my daughter tested moderately allergic to a number of things including cats, dust mites, bermuda grass, and pollen from some trees. Interesting. She never showed an allergy before to cats but after becoming sick we started to see reactions. Below are the mold labs.

If this seems like a lot, it is; however, my daughter has been so good about taking it all and I really do attribute her healing to this regimen. *She stopped taking the Alinia several weeks ago because insurance stopped approving it (and it’s $300/month). *She stopped the malarone about 2.5 weeks ago but has had some complaints the last few days of headaches, stomachaches, rib pain, ankle/knee pain, and shooting pains so we may start up on one or both of those again. It’s very hard to know if she’s having normal aches and pains or if it’s illness-related, but if the symptoms are kind of random and they remind me of her original symptoms, I see red flags. She was still positive for babesia several months ago and I don’t think we have tested again since then.

She also tested positive for mycoplasma, HHV-6, and high eosinophils (which can be indicative of allergies or parasites). The scariest one for me though, is that she tested high on her ANA’s again and specifically for SCL-70, which is indicative of Scleroderma. I hope that it’s a false positive. I have read before that high ANA’s can be falsely positive with lyme disease (and hers were very high at 1:1280 at the height of her illness). Her specialist seems to think it could be related to her chronic infections and says we will just keep an eye on it. The high Human Transforming Growth Factor Beta 1 can also be related to mold, so that’s still a bit of a conundrum to us. (But, with what I have read, it seems to have a relationship to the immune system and inflammation in general so that might be why it’s high). Here are what some of her labs look like:

These are all from last June (2017) and she continues to get better so I just hope that we can stay on the right track. My daughter is a very quiet and stoic child and she does not usually complain very much. So it is often that I will have to ask a very specific question to understand how she’s feeling (like when I’m trying to get information for my phone consultations with her specialist). So, in times when she actually vocalizes her complaints, I know that it is really bothering her. Anyhow, after taking off 2.5 months of school and work in the fall of 2016, we returned to school and work after the winter break in January of 2017. So, this January, 2018, marks a full year back to “normal” and that is exciting news! She still has dermatographia and warts

dermatographia

wart over eye

that won’t go away (so they are being frozen off over time). And I am very worried about the mandatory vaccines for junior high but that is a whole different can of worms.

To look on the bright side, overall, things went so well this year that I actually coached my son’s fall 10-U AYSO soccer team. Both of my kids won first place in their category for the PTA Reflections art contest.

My daughter has stood up in front of the class to give speeches, she sang in the school performance, she has been getting A’s and B’s in school, and she recently received the citizenship award. I just hope this will all continue as we modify her treatment plan and she goes off to junior high.

I really feel like pictures speak volumes. I know that she hit a growth spurt but this past year has made a huge difference just in the way she looks and I think a lot of that is due to healing as well.

A look back at December, 2015

On the left: 2016– she made it in for picture day but school anxiety (PANDAS) pushed us to take the rest of the semester off. On the right: 2017– My 6th grader!

I have not posted in a while due to my incredibly busy schedule. I started back to work full time last semester after a semester off and we are now back into the swing of things for fall. I have decided to volunteer this season to be my son’s AYSO 10-U soccer coach (with no soccer experience whatsoever)! It has really started to get fun though as the games begin and it keeps me off my couch–and computer–on two weeknight evenings and Saturdays! The kids also just started Brazilian Jiu Jitsu, which they love. It’s the first organized sport that my daughter has tried in over two years, which is a big step–she’s feeling so much better and we have hope that she is going to be completely healed for good! She’s still taking all of her meds/supplements but our hope is to wean her off in the near future. We also have come to the realization that we must replace our wood floors and look into the walls in the kitchen so the cupboards are coming down and we are preparing for a pretty decently-sized remodel. We got our ERMI mold test back, and I will go into more detail about that another time.

I bought a couple new books that I wanted to add here. The first, “Brain Maker,” by David Perlmutter, MD, is a fascinating look at the gut microbiome and how it affects both our physical and mental health.

The second, “Healing the New Childhood Epidemics,” by Kenneth Bock, MD and Cameron Stauth, will open your eyes to a different way of looking at autism, ADHD, asthma, and allergies, four common childhood epidemics that continue to rise at alarming rates.

I have always been a fairly introverted person, never one to push my views on anybody or to state my opinion as fact. But I would quietly disagree with certain perspectives or think to myself that certain strategies were over-the-top or just plain ridiculous.

Over time, my views about diet and food have certainly changed. I had horrible cystic acne as a teen and young adult but I felt like I was healthy because I was a very fit athlete. I could eat whatever I wanted and stay fit. I probably was more likely to eat the non-fat yet sugary foods. Now it is my perspective that the sugars and artificial ingredients in many of the foods I ate contributed to my acne problem (and they have likely at least contributed to my current health problems). I ended up taking antibiotics for a while to reduce the acne but, even these days at age 39, if I eat poorly I will get a little break-out. Over time, the small health problems kind of added up. In college, I was diagnosed with iron-deficiency anemia. As a newlywed in graduate school, although I was still really fit, I had gallstones and went through surgery to remove my gallbladder. Then, after giving birth to my two kids, I was diagnosed with Hashimoto’s Thyroiditis, which is autoimmune hypothyroidism. Now, I really have to make certain choices when it comes to the food I eat. I’m not the best at it but I try.

So, while I have (most of my life) felt fairly healthy, I still had these little health incidents going on that were likely pointing to a bigger problem. My doctor would not test me for the antibodies related to Hashimoto’s even though I asked him on at least three occasions, my identical twin sister had been diagnosed with it, and my TSH was slightly elevated. He told me it was more-likely lab error or related to my non-allergic rhinitis, allergies (which I was never known to have), or just being a busy mom of two young children while working full time. He even added “Chronic Fatigue Syndrome” to my file without mentioning that to me at all. (Unfortunately, CFS has long been associated with being more of a mental health issue but I think research is disproving that). I finally had the nurse practitioner test me and I was positive (had elevated antibodies), which indicated Hashimoto’s Thyroiditis. I changed doctors right away and asked my new doctor if she could help me. The first question is always, “are you depressed?” Sure, it may look that way when you’re feeling like crap, nobody believes you, your doctor won’t test you, and you can’t hold back tears when you ask the new doctor if she can do something about it! I was not bedridden and I did not look unhealthy but I was overly exhausted and I could no longer identify with the tired, cranky person I was becoming. Why would we not be proactive in making sure that my problems didn’t get worse?? I think that’s part of the problem with the medical system today. That experience was a bit of a foreshadowing of what I would go through with my daughter, but fighting for my daughter has been even more difficult.

Before my thyroid issues and my daughter’s illnesses, I had blind faith in mainstream medicine. I did not question the insurance companies,pharmaceutical companies or medical groups and their tendencies to be profit-driven businesses. It did not concern me and was not even a thought in my mind. I know there are many fabulous doctors and healthcare providers out there and they are probably fairly limited in who they work for and how they must do business as directed by the insurance companies. It doesn’t seem right but I suppose that’s just the way it is. At least I know I can choose to go a different route when it comes to who is providing the care, especially when specialized care is needed. I don’t know why–maybe it’s just naivete–but I initially did not know I could go to a different ER to get a second opinion and I didn’t realize I could search out a healthcare provider out-of-network and pay out-of-pocket. I wish the policies were different, but paying out-of-pocket (and going into more and more credit card debt) to receive specialized care for my daughter has made all the difference and it has definitely been the right choice for us. I trust a lot more now in functional medicine, integrative medicine, and holistic medicine and I do not scoff at alternative strategies and remedies like I may have in the past. I do my research of course and I don’t believe everything I read on the internet but I am also more open-minded.

I just have to accept that not everybody else will have this perspective. My life experience thus far has brought me to my current way of thinking and everybody’s life experience is different so we will always have the “Pro-Vaxxers vs Anti-Vaxxers” (another plight for which I have become more sensitive and open-minded), the “Lymies” and the “Pandas” vs the deniers. If we had not gone through this, I might be on the other side of argument or, at the least, skeptical.

I think the phrase that I’ve seen about Lyme disease sums it up perfectly: “You won’t get it till you get it.”

MOLD??

This brings me to our current predicament. My daughter’s specialist had requested for months that we test our house for mold. There was a mail-order test that would cost a few hundred dollars but, between my husband discouraging me and going further into debt, I kept putting it off. Plus I was just kind of in denial even though we had a previous leak from the master bath into the kitchen ceiling and cupboards, our dishwasher leaked and lifted the wood floors, and we have four dogs so there are a few areas that have been slightly affected by repeated dog pee. My husband fixed the leak, we aired out the wood floors, and we always clean up after the dogs but nothing was ever fully inspected or fixed. So, my daughter’s specialist decided to order some blood work to determine if she might have been exposed. The reason for testing is that my daughter did test positive for MARCoNS, she becomes congested with post-nasal drip fairly frequently, has frequent bloody noses, and she still has some lingering symptoms after being on treatment for nearly 8 months. My son (without PANDAS and Lyme) also has frequent bloody noses and, for about two years, he has been having periodic severe pain in his eye(s) accompanied by nausea and vomiting (which we are beginning to suspect are migraines). He also has a history of asthmatic bronchitis,RSV, and hay fever (which he had before we moved into this house). I would never naturally think to myself that these issues could be related to or exacerbated by mold. My daughter’s test results came back and she has elevated IgG levels to Stachybotrys (aka the nefarious black mold), plus moderate IgE levels to Cladosporium, which indicates an allergy response to that specific mold. These are important because, for a person suffering from immune issues (such as Lyme and PANDAS and even asthma and allergies), mold can make matters worse and impede the healing process.

We own our home and we would like to stay here so our options are to test the house, have it remediated, and replace the damaged areas (otherwise sell the house, but having to disclose that we might have a mold problem). Depending on the damage, it can cost thousands to remediate and tens of thousands to replace everything. I have even heard from others that they walked away from their homes and any porous contents (e.g. clothing, books, mattresses, furniture) entirely. If that’s not enough to stress people out (on top of all the other crap), I don’t know what is! Seeing as we are already in debt, we had to delay the mold inspection because he only takes cash (we are opting for the entire house inspection with indoor/outdoor air quality inspection as well for $500.00). That will be done in a couple of weeks. We drive up north to see my daughter’s specialist next week. Then we will talk about refinancing the house (we are lucky to have a decent amount of equity) but with our credit card debt I’m not sure how optimal our credit will be. I just hope we can pull it all off and stay in our home!

For more information on mold, there is a free documentary at moldymovie.com.

I just feel like it never ends and it does stress me out and depress me but life goes on. We are lucky to be at the point in which we know what’s going on and now we just have to get to work on fixing it! After all, health is the greatest gift we can ask for.

I am excited to say that Dorothy Leland from Lymedisease.org has published a commentary I made on her website. Please take a look!

We are receiving some more test results for my daughter after she had to sit for blood draws three days in a row. Good thing she’s so brave! We will be making a trip up to San Francisco to see her specialist in July. Once we pull it all together, I will give an update.

I finally had the chance to put together a slideshow of my daughter’s journey with Lyme and PANDAS. With the visuals, it really gives you a good idea of what she has had to deal with. I hope you will take the time to watch it and share it!

On another note, the documentary about PANDAS/PANS called, “My Kid is Not Crazy: A Search for Hope in the Face of Misdiagnosis,” is now available for sale for $19.99 or for rent on Vimeo for $3.99 (48 hours) at their website: https://mykidisnotcrazy.com/watch-2 .

I think it would be a good video to watch for parents, healthcare professionals, and educators alike.

“Infectious Madness” starts with a passage that hooks you. I had no idea of the facts that she presents and I wonder how many people actually do. She states, “The earth alone holds five million times more microbes than there are suns in the universe. It is home to five nonillion infinitesimal beings–that’s a 5 followed by 30 zeros.” Did you know that five million bacteria and fifty million viruses are present in every teaspoonful of sea water? It makes you wanna go for a swim in the ocean, right? Most astonishing, however, is the fact that MICROBES DO NOT JUST INFECT US, “THEY ARE US,” explains Washington. WE, AS HUMANS, HARBOR MORE MICROBES THAN HUMAN CELLS. Our intestines alone are home to one hundred trillion viruses, fungi, protozoans, and–mostly–bacteria. “THESE SINGLE-CELLED GUESTS OUTNUMBER YOUR CELLS TEN TO ONE” Were you aware of that?

Washington goes on to explain how fetal exposure to infection has a correlation with one’s psychiatric fate. There is a “seasonal” pattern in that children born in the winter months (in which infection is more rampant) have a higher likelihood of developing Schizophrenia or MS later in life. She describes the connection between Syphilis and Pareses, infection and Schizophrenia, Strep and PANDAS, and even retroviruses and Multiple Sclerosis. In the author’s search for a causal connection between infection and mental illness, she came across historical evidence. Patients with syphilis once filled one in every five beds in the mental asylums of New York City. When scientists discovered that penicillin cured syphilis, they also discovered a cure for the common mental disease of paresis. For those who struggled long with the illness, however, some of the effects were irreversible. Why is it so hard for doctors today to believe that infection and microbial imbalance can cause chronic physical and mental symptoms? It is a fact that microbes can trigger cancer (e.g. HPV- human papillomavirus); hepatitis (e.g. hepatitis C virus); ulcers (e.g. H. Pylori bacteria); and heart attacks (e.g. Chlamydophila pneumoniae bateria). Many of my daughter’s symptoms looked like SLE (Systemic Lupus), which is the reason she was misdiagnosed and, in my humble opinion, if we had not caught the lyme and co-infections, she would have continued on the path to severe, chronic autoimmune disease. And that would be because the doctors told us she had a psychological condition called “Somatoform Disordrer” and the only treatment options were SSRI’s, psychological counseling, and ignoring her complaints.

This relationship with microbes is important to human life. It is one reason why probiotics and herbal microbial balancers are so important. We need to fight the “bad” bacteria with the “good” bacteria. We also need to re-balance the immune system instead of suppressing it to address the symptoms. To do this, doctors need to think out of the box. My daughter’s current long-term treatment plan includes 2 different antibiotics, 1 anti-fungal, 1 anti-parasitic, 1 anti-inflammatory, 2 different probiotics, 3 different herbal tinctures, and 4 different vitamins/supplements. This is the plan that is, so far, keeping her well and hopefully curing her. She is doing much better but still has some complaints so her specialist changes things up as needed.

It is interesting to note that modern medicine does have in practice the procedure of “Fecal Transplantation.” Fecal transplantation (or bacteriotherapy) is the transfer of stool from a healthy donor into the gastrointestinal tract for the purpose of treating recurrent C. difficile colitis. I do believe it is being used for other diagnoses as well and it is working!

A fantastic film to watch is the documentary, “Life on Us: A Microscopic Safari,” which you can find on Amazon Prime and on Youtube. “Just like planet Earth, our body is composed of diverse landscapes and habitats for a surprising array of wildlife. ‘Life On Us’ offers a unique perspective, encountering the creatures that live, thrive, compete, feed, breed, are born or die on or in our bodies.” This film also discusses fecal transplantation and a host of other topics related to bacteria and chronic illness.

Moving on, to the book by Susannah Cahalan, “Brain on Fire.” The author was an up-and-coming reporter at the New York Post whose world spiraled out of control leading to her waking up one morning in a hospital room with no memory of how she got there, strapped to her bed and unable to move or speak. It was 2009 and she almost slipped into the darkness of being misdiagnosed with a debilitating and progressive mental illness that was, in reality, caused by an over-active autoimmune response in the brain which had been in response to an infection. It was fortunate for her that Dr. Souhel Najjar joined the team and tested her and diagnosed her with Anti-NMDA Receptor Encephalitis. Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions.

I do give credit to the doctors at the children’s hospital for actually testing my daughter for this condition when she was hospitalized. It was negative of course. I am dismayed, however, that they did not give the same credence to the Cunningham Panel, which tests for antibodies in the brain as a response to infection, which causes PANDAS/PANS. She had a blaring strep infection and ASO titers that continued to go up even with treatment. Six months later, my daughter tested positive on that test. I look at Susannah’s story as a reflection of what these kids with PANDAS/PANS are going through because the mechanism of the disorder is the same. (Some kids with PANDAS/PANS are actually diagnosed with having post-infectious encephalitis and many wonder if that is actually the correct term for the disorder. Plus insurance covers treatment for encephalitis but not necessarily for PANDAS/PANS).

An exciting thing about this book is that it is soon to be a major motion picture starring Chloe Grace Moretz. Brain on Fire, the movie, will be in theaters this year!

In closing, I have to link to this story that my dad has told me a few times since I was young. I feel like it is a good analogy of what goes on in the medical community when their belief systems are challenged. Take the handle off the pump!!

I’m so excited to announce that our local newspaper, “The Signal,” requested to do a story about our race to bring awareness to Lyme and PANDAS and raise funds for LymeLight! I had written an email to the paper asking for a quote on the price to put our fundraiser into the paper and Signal Staff Writer, Christina Cox, got back to me and said she actually wanted to do a story on us! She interviewed us in person and I gave her tons of details. I feel like she pulled it all together pretty well. Here is a picture of the newspaper article. Below that I will post a link to the online story which has a link to the fundraiser!

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The Dawn of Aquarius

Let it Burn!

Imagine your home is on fire.
You call the fire department 3 or 4 times but they don't seem too concerned.
In desperation you plead for them to come see the fire.
When they finally get there they say, "Yeah, your house is on fire but we don't know what's causing it so you just have to let it burn itself out."
But your family pets are inside, your life's savings, and all of your memories.
They will be damaged or destroyed if you don't do anything about it now!
Now imagine it is not your house on fire but your young child's body inflamed.
This was our experience with our daughter and the medical community in December of 2015. Please read my posts to get the details!